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Author
Topic: How soon did you start meds? (Read 7893 times)

I am a bit concerned. I got my lab results and they look pretty awful. Low 200's and VL 26K. My doc said i will be on meds and I am getting the geno test today. Even after the geno test I have to wait an additional 2 wks so I can talk to a nurse and adherent and they can inform me of the med and educate me. It worries me that I have to wait 2 extra weeks because my nums can any day now drop below 200. She put me on bactrim which has helped but I am starting to develop a cough. I told her this but she said there is nothing to worry about and bactrim will work for now and she doesnt believe my numbers will drop that much from now till the end of the month. I feel like someone is holding a gun in my head and she wants me to wait 2 wks to start meds? Is this normal/.

Can really relate to your feeling of aprehension about the wait and not qualified to say that what your doctor is doing is wrong, so I'll just tell you my own experience which might help I hope.

I was diagnosed after I was already very sick, first test showed a CD4 of 17 and uncountable VL. Because of the PCP and other stuff, I had to get that cleared up before I could even start on hiv meds. That took over 6 weeks, and like you, I was wondering the whole time if I was going to get even worse as far as the hiv went. Just before starting my hiv treatment (Atripla) my numbers had actually improved slightly and I am hopefully that when I see my doctor next week and get my latest results that they will be even better now that I have been on the Atripla for 6 weeks.

From my own experience and everything I have read, the Bactrim is a very effect treatment to prevent or treat people and there are many other symptoms that go with PCP besides a cough, so I hope you won't worry too much about it, especially since your numbers are borderline for starting treatment from what I know.

Good luck and hope you'll let us know how it goes.

Kevin

Logged

And I wished for guidance, and I wished for peaceI could see the lightning; somewhere in the eastAnd I wished for affection, and I wished for calmAs I lay there - Nervous in the light of dawn

Glad to hear you are doing better. I am sure your nums will be much better from now on. Take good care of yourself I've heard people have counts like yours and 4-5 years later are above 1000 CD4 counts.

I was diagnosed when I was really ill, in hospital with AIDS and a cd4 of 35, and a VL over 300,000. I was put on meds after two weeks also as they were too busy treating my PCP, and other nasties that are thankfully long gone. Incidentally my cd4 is now over 200 after 12 months of meds.

I waited until my CD4 dropped to the low 200's as well. I started the genotype testing on 10/31 when my CD4 count was 208 and my VL was 22K. After the tests came back, the doctor and I opted for Sustiva and Epzicom. I was also put on Bactrim. I started my meds on 11/22.

Long story short, I discovered I was sensitive to both the Abacavir in the Epzicom and the Bactrim. This resulted in a hospitalization plus a one break in my meds. So here I am two months (roughly) with a CD4 count of 384. I am confident the VL is down but don't have the test results back. I am currently on Sustiva / Truvada.

My take on it is relax. You're doctor is following a prudent course of treatment. My only advice is to learn what youc an about the drugs you're taking and talk with your doctor openly and candidly. Ask questions when you don't understand. They are there to help you.

Good luck.Tom

PS - Send me a message if you have questions sicne it sounds as if we have similar stats.

I started three months after my diagnosis with a CD4 count of 524. I had dipped into the upper 300s but I wanted to be aggressive about this. I had read that earlier treament seems to have some advantages and that today's meds are much less toxic. I've had a great rebound in CD4 with a doubling of my % and absolute count over 700 now.

I waited 11 years or so to start meds. PCP was the reason...go figure. My former doc in title only wanted me on Crix and Norvir plus AZT in what I refer to as the old days. Two days on that crap, I said no way.

Fast forward two months and 50 pounds lighter, I used to weight 185 prior to PCP and had a decent body from working out and decided I needed some help. I had a good friend who has since passed and told me to see a new doc. Long story short and if you want the long version email me. I failed three combos and now have a combo that is working.

If I had a choice and seeing how I am compared to my partner who started med in the mid '90's, I wish I would have started years ago, but we are all different. That is my story.

There was an article I did read recently (http://www.aidsmeds.com/articles/1667_11093.shtml) indicating a direct correlation between your CD4 count when you start meds and the expected range after being on treatment for several years. Apparently, the sooner you start, the more likely your CD4 counts stay very high. Now I wish I had started sooner.

Well, I was diganosed one and a half month after being infected, I passed acute syndrome, I realized I could have the bug and went on my own directly to have a PCR test because I new an ELISA or a NAT test would not clarify anything so early.

Then I went to my doc. This took 15 days to the appointment date. Then she repeated PCR, and made a CD4 counting and all the battery of hepatitis, toxo and the other tests. That meant 3 weeks more... So, almost 3 months of waiting since the infection point.

I started Truvada + Sustiva. Changed Sustiva one month after due to severe rash and pain in joints and continued Truvada + Atazanavir + Ritonavir, and that's my combo right now, six months after.

Results: first PCR 38 days after infection date: 265,000 copies mid may 2006 (I had no CD4 account at that point)

I made a genotypic test on august and had no mutations for primary resistences.

I made a second genotypic test last november, they couldn't isolate virus, due to low VL, so they will try a lymphocite cultive next month.

I made new VL and CD4 test by mid january and will have results for the next week.

When I was proposed to start meds so early, my doctor told me that in a year or so, we will stop treatment and see how my labs will evolve.

But, since then, there's more evidence indicating that treatment interruptions is not a good idea, the gains as per regards of lowering tratment side effects don't seem to worth the risk of rebound of virus.

So, I do not now for now if I have to keep lifetime on meds as from now or if I could stop for some months or years...

So, starting early seems to be a good idea, I feel fantastic now, but maybe the price is to be always taking meds, due to once you start, there's no way back...

I'm definitely not happy with my current doctor for a variety of reasons. I've got major fatigue and she seems to dismiss that as all in my head. Most recently, I had some type of breakout and she suspected Staph. Well, she did some test for it and never bothered to call me with the results. Turns out I didn't have staph. Still don't know what it was, but I've never had acne or any of that before. Most of it's gone, but I have an itchy splotch behind my knee which I think was a bug bite or spider bite and now it's bout the size of a quarter. I've been putting neosporin on it for now and giving it a few days.

I'm definitely getting a new doctor with a better staff. One who picks up the phone would be nice ; ) My other HIV doctor was much more thorough but lot further away. I'm going to try one other one first, but if I have the same issues I'll just make the drive to the first one.

So, the one thing both of my HIV docs agree on is niether recommend me taking anything yet. I'm stressed out and wondering if I am waiting too long. I know my numbers aren't terrible, but I also am certain the HIV is causing the fatigue and miscellaneous other issues.

I ask a LOT of questions and this current doctor acts as if it's all my anxiety. She wanted me to come back in May? Well, of course I'm anxious watching my T Cells slowly dwindle down. It makes me nervous when my doctors both say I can prescribe the drugs for you, but I wouldn't recommend it?? What the Hell? Both seem to feel I should wait till I'm around 300 or lower.

Now, one other problem was this doctor found out from my other doctor's records that I have an anxiety disorder. However, I've taken the same damn med for it for 14 years and I probably have taken a few extra lately ; ) Anyways, once they see that prescription they automatically assume you are some nut case. She went so far as to say she didn't want to prescribe Atripla because it causes anxiety and depression? I told her I didn't care and would chance it.

I guess my current plan is to go to a 3rd doctor now and have her review everything and retest in another month or two, not four with my cd4 count at 354.

OK, so I think my story is fairly common and I'm hearing mixed answers all over the place. Would love some sound advice??

I think your doctors are simply buying you some time before putting you on meds. What more do you think they should be doing? You were just infected and yes one lets it run its course when you started at 627 until it gets around 250-300 (well, that's what I would do... not sure I'd wait until 200 but that's your call). Anyway, once you reached the 409 your counts are still within 50 of that... you're not dropping like a rock if you take out the first number... same relatively with the VL. I don't find what your doctor is doing negligent by any means, so yes it could be that you are overly anxious.

If you're next numbers are say 275-300 then make the decision whether to start or not. By that time your doctor will have bought you over a year med free. Yes, it's too bad it wasn't longer but it's better than nothing. Once you start meds your numbers will probably rebound quickly because you're not starting out with anything dire numbers-wise from what you just posted.

If you don't like your doctor as a personal thing then by all means look for another one, but I see nothing weird with what she is doing. As far as the pre-existing anxiety issue I don't see them saying you are nut case, just trying to provide you with some context. I kind of agree with them, and no offense but this is coming with someone who has been on anxiety meds for years too! Good luck and keep us posted.

Actually, let me clarify. I have no problem with the prior doctor. He was just pretty far away. Everyone else told me this one was so great, but I don't think she spends enough time and I think waiting an additional 4 months for another test is too long. Primarily, it's just her lack of ability to answer questions and her staff is not responsive. And, I felt my other doctor was much more thorough. He always did a complete panel to ck liver functions and everything and went over CD4 CD8 %'s each time. And his office is great. So, I guess partially I was venting frustration and also trying to get opinions on whether or not I should just start meds.

So, I'm gona see about another doctor a couple friends recomended.

That aside, it seems to be from the overall picture I've gotten that once you let your CD4 drop so low it takes forever for them to rebound. And, today I've read a couple of posts of people saying studies indicate this. I sort of feel like the doctors now are kinda testing all of us as a new lot to see what happens if they delay drugs. I don't know. I've also read from a few people who say starting gave them a sense of control and comfort back which is something to consider.

If you're uncomfortable with the doctor definitely switch. Why make something so vital more of a miserable experience than necessary? Even more so with a bad staff. I see you live in Austin so I would think there would be a decent amount of experienced HIV specialists. I've only ever fired one doctor, and I think she need mental help. The woman actually screamed at me over the phone and hung up on me -- can you imagine a doctor hanging the phone up on a patient. I was really close to reporting her to the AMA.

And I disagree with your last statement. I think you're mistaking you situation for some people who get diagnosed and are under 200... like more down in the double digits. Yes, if you let it get down like that it's much harder to get back up, and that's because by that time they have a VL probably in the six digits, whereas yours is not. If your VL was six digits and you had your current cd4 count and falling they may have gone ahead and started you. I really think you are fine to wait until your next test.

Your last point though I think cuts to your anxiety situation, which is at heart a control issue. You feel out of control and you feel that the meds will give you some of that back. That may be true for a while, but from one anxiety person to another once you have to switch a regimen after the first time you'll just freak again. Better to work on some cognitive behavioral therapy sessions as much as anything, which hopefully you have been doing. But the bottom line is that you are at a point where it's certainly not unreasonable to begin meds, you'll just have to be extra-insistent. You stated they did state that if you insisted they would go ahead and write out the prescriptions, they just didn't agree it was time quite yet.

Atripla has Sustiva in it, and yes in some people it aggravates depression/anxiety. I have no idea how severe your diagnosis is for anxiety so there's no way I could say much on how it would be for you. Try it out... if it sucks they'll switch you to something else. Maybe make sure in your case you have some xanax on hand, though maybe you do already.

Really appreciate your input. I have never been able to get her on the phone to yell at me Oy, that's terrible.

Part of the issue has been personal friends who've been pos. for 10 years. Back then, almost all were immediately put on meds so when I share my counts and concerns with them they all tend to say what are they waiting for.

I've now got new doctors recommended and feel a lot better I have a plan of action.

do you have your CD4 % numbers?They tend to fluctuate less than CD4 counts and some doctors believe that the CD4 percentage gives a more accurate measure of how much immune damage has been done.Nowadays more doctors are using both CD4 count and CD4 % to determine when to initiate treatment.

In the recent article "Both CD4 cell count and CD4 cell percentage can guide decisions about starting HIV therapy" the investigators concluded that "Absolute CD4 cell count and CD4 percentage should be considered when decisions are made regarding which patients may benefit most from earlier initiation of therapy"

I used to know the percentages from the two labs done with my other doctor. I don't know the percentages from these latter two labs because my current doctor didn't bother to tell me.

I want to say those first two tests were something like 25 and 28%. I don't know about the second two. Is there a way I can calculate it myself. My other doc. always made sure I had copies of everything.

Yeah Austin, get that info. When your VL is not UD the % really becomes the best marker. If the % is going up but the cd4's are going down they kind of cancel each other out, with the % actually getting more weight. With the % it's not so much the actual number (though it's a good marker) but the long-term trend with it up or down. Unless numbers of most any kind are tanking (meaning big shift) the more important thing is always to look at a trend versus a simple snapshot.

These two articles were great. Thanks for taking the time to post them. I learned a lot from them.

Hey Philly,

Thanks for putting that percentage bit into plain English. Eh, now I don't know if the 2nd doctor did the tests for CD4% cause she never told me.

I think it may be worth going back to first doctor who was so on top of things despite the added headache of the drive. I'm gona call and see if I can have my records transferred back to his office and resume with him instead of switching to a 3rd unknown.

However, after reading those articles it did indicate that starting treatment while counts are above 350 seemed to be better for handling side effects so that kind of trends into how I was thinking. That, and the fact that CD4's seem to rebound quicker when treatment is started earlier.

Ihavehope and Wesley and All,Finding a knowledgeable doctor that you have good communication with is of paramount importance. There needs to be a high trust factor as it's a major importance to your future health, right? Get another doctor. Any doc who would tell me that the fatigue is in my head would be one I'd be making tracks away from.

I would be looking for a doc I can communicate with. Even though these docs may know what they're doing, if they don't communicate that, they are useless because you are the keeper of your own health, not them.

That said, I have a sligthly different opinion of when to start meds. I probably wouldn't let the CD4s drop below 300, or not much below. I say this because, from what I've seen, results are better when people start at 300 or above.

Under no circumstance would I allow my T-cells to drop below 250 before starting. That is too close for comfort. But, that's me.

You must decide what's right for you. Starting meds isn't something to be taken lightly.

Because living wtih HIV is so individual, it is hard to make a concrete recommendation Just my 2Ę worth.

I believe the sooner the better. I was blessed with a great doctor. I remember when he first put me on meds. I was so sad and scared but he explained to me why he felt it was best to do it at that time. I now know that he was right! Why? Because recently I have been hearing doctors saying its best to put patiens on meds the sooner the better. Well, my doctor told me this back in 1996! Well, I've been on meds for 10 years now. My vl has remainded undetectable all these years and my cc4 counts has been around 1200 (except for one time that it dropped to 879). I just had my labs done and my cc4 was once again at 1254! I really believe my doctor was right and thus I think the faster you get on meds the better. I'll keep you in my prayers!!

I believe the sooner the better. I was blessed with a great doctor. I remember when he first put me on meds. I was so sad and scared but he explained to me why he felt it was best to do it at that time. I now know that he was right! Why? Because recently I have been hearing doctors saying its best to put patiens on meds the sooner the better. Well, my doctor told me this back in 1996! Well, I've been on meds for 10 years now. My vl has remainded undetectable all these years and my cc4 counts has been around 1200 (except for one time that it dropped to 879). I just had my labs done and my cc4 was once again at 1254! I really believe my doctor was right and thus I think the faster you get on meds the better. I'll keep you in my prayers!!

Fantastic Numbers Cheo.

I also suspect it's best to do it sooner but most experts now a days prefer you don;t. It's odd. But I am starting this weekend.

I had a CD4 of 22 and had to wait 2 months to start meds because they could not seem to get rid of my PCP. That was a LONG two months in and out of the hospital, living on O2, etc. 2 weeks is nothing, you are panicing without reason .... stress lowers CD4! Seriously, 18 months later, cd4's vary from 450-550, percentage in the high 20's and a VL that is undetectable. Take a deep breath, take a walk, RELAX.

I've tried sending reply to this post prior lol. So I'll try once again with a different objective.

For me and only for me, I started meds very early, and when treatment options, were nill, AZT was the only medication available.. And I've not been without meds since. Although in full honesty, untill recient never 100% compiant with regiment.

I beleive that knowledge is power and allows us to make informed choices, and decissions. Their is just to so much information available here and other sites.

This is only my thought as to why Dr. maybe doing what he/she is doing. Unfortunally and factual, lots of poz individuals are still engaging in unsafer practices, not disclosing to partners, on medications, and as a result we/they are seeing lots of various mutations of the virus. The most complex area is drug resistance to various medications. In other words if sexual partner is poz, on meds, engaging in unsafer parctices, one most likely not only receives the sexual experience, but also a dose of their medication(s), which can cause resistance to lots of medications, cross resistance is also a factor since medications share similuar compounds, knowing weather someone has the mentioned factors can be major factors as to what type of treatment options one may benifit most from. The last thing we want is too run out of treatment options. I recently did a med change, and although I still have options, their are some meds with compounds that I can no longer take do to resistance, and other in which I had sever reaction too, which if taken again could kill me, should I just take one dose of.. So it's important for you, as well as healthcare provider to know these factors.We are all different, and respond too treatments the same way (medications) differantly.

Infected by end of march 2006. Started meds end of June, within 3 months after infection.

My doctor has told me that cd4 % is as important as cd4 absolute numbers. When tested for the last labs, in january, I had a severe flu, with fever, thus CD4 went down from 1280 to 940, but % went a little up from 43% to 45%

She said that, in normal circumstances, let's say, standard, my cd4 count should be up and down between 1000's and 700's if meds do right their work and I take them properly. She remarqued that trends are the most important, and prompted me not to worry a lot about cd4 oscilations.

I asked her about the possibility of taking a selenium supplement. She told me that if I eat cereals, meat and fruits, the selenium apport from food should be enough in itself.

But, anyway, she told me also that I could try a Se supplement, taking it one month and not the following, alternativelly, because selenium is an antioxidant and helps in some way to recover the production of white cells. So I will try it and see what happens.

She also cleared one big doubt I had: Am I supposed to stop meds into some months or one or two years and then wait and see?

She said it clearly: No.

Last year, when I started on meds, that was the idea: being on meds one or 2 years and then stop and wait and see. But results from several studies (SMART and others) show that the wait and see strategy apports no advantages and, by the contrary, could comport some risks.

So, I will go on on meds for a lifetime... let's say that's the price of starting so soon.

Benefits? Well, as far as can be seen, If I keep what we could name a reasonable good health (in spanish we say "una mala salud de hierro" "a good iron-made bad-health") I will stay more or less as I am now.

In my opinion, another benefit, purely psicological, is that I have avoided the stress of seing my numbers going down and the sensation of being doing nothing but waiting... Once you start meds, this becomes something done, it's ok, you just have to cope with it... that's more or less as I feel it, and I feel OK as per regards of it, kinda released...

Hi Alberche!I agree with you and your Dr. Whe I was diagnosed I was told they would wait until my cd4 dropped to 350 because there was no benefit in starting earlier. When my CD4 reached 503 I told my Dr I wanted to start immediately and he agreed. They seem to be changing their protocols pretty fast.

alberche: such fabulous numbers! I'm curious, if you do not mind my asking, was it not rather odd to start HAART at such a high cd4 level? You did this primarily because you WANTED a structured treatment interruption in 2 years? I just want to make sure I follow what you are saying.

As far as structured treatment interruptions, I know that there's been mention of it at my clinic and that they do it with some people, heavily monitored of course. It seems from posting on this board some folks have been told "no way this should never be done" whereas others have done it. Like anything, some doctors are more progressive and others more conservative in treatment.

What happened in my case is that I was diagnosed and went to the doctor during the first 2 months after being infected.

My doctor proposed me to start immediately with meds beacuse I was within the 3 first months after the infection and could, theoreticaly, have benefiits from such an earlier treatment: keeping most of varieties of lymphocite families and preventing the virus from a hughe dissemination.

So I decided to start.

At that point, I was informed about the risks of starting so soon, essentially: the need to keep on meds for a lifetime, with no interruptions, or with no more interruptions than the first one if it didn't produce good results.

But, during these months, SMART study interruption and many other data seem to have changed recommendations as per regards of treatment interruptions, and also as per regards of when to start: no more at 300-200, but maybe earlier.

Well, I asume it, I feel OK and I'm already used to meds. I thing I made a good decision.

Maybe if I was in other circumstances, such as diagnosed many more months later or even years later from the infection date, I could consider waiting a bit more before starting meds.

Hope this helps!

Big hughs :-)

Logged

love is blindness... a wonderful song!

donnahornby

Hi, I started combivir and sustavia three weeks ago after being positive 1 month short of ten years. Had planned to start with a cd4 of 230 but it dropped from 385 to 187 in six months and didn't give me a chance. I always wanted to start as late as possible because I figured options would be better later and I was scared of side effects and compliance. I do feel a bit nauseaus most of the time at the mo, but it's OK. Maybe I should have started earlier - but I'm not dwelling on that. Too busy trying to live my life - if it has to be short, it has to be full! Hard decision though - very anxiety creating.Donna from south africa

Well, I think each one of us in the end knows when is the right moment to start: when you feel prepared for it.

I was given the choice to start so soon by my doctor and I accepted. Now I feel OK, I am used to my treatment and I think this is a step already done, so I can resume and go on ahead with the rest of issues in my life.

The most important, I think, is to be well informed, have a supportive doctor and chat with people in a similar situation in order to get information, learn from other's experiences and then decide by yourself.

Side effects are always there. After 9 months I steel feel a bit of nausea from time to time, a little pain in joints that comes and goes, some dryness in mis skin, particularily in my face, but for the rest is OK. The first weeks are the most difficult ones, then things get somehow easier and it rolls.